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What to Expect This Saturday
Thursday, November 03, 2011

By Chris Martin

Halloween has come and gone. And for some odd reason, the snow has too? Who would have thought parts of our area would be covered in snow long before anyone had a chance to add extra layers of warmth through the powers of turkey and stuffing? Perhaps it’s just another reminder that we always need to expect the unexpected. If there was ever a group of people who knew to expect the unexpected it is us, the patients and families affected by ALS.

In spite of being forced to deal with the unexpected grief, pain and sorrow of ALS, so many patients and families have managed not only to cope and carry on but also they amazingly manage to thrive. And now I think every one of us deserves to experience something expected. And what better way to accomplish that than through the ALS Walk this Saturday.

Here’s what you can expect if you come to the Walk this Saturday. Love and hope. Strength and courage. Joy and triumph. You can expect to be comforted by the sheer numbers of people around you. People sharing the same stories as you. You can expect to be uplifted by the spirit of what we are all trying to achieve. People banding together to bring an ultimate defeat to a horrible disease. You can expect to see and meet PALS (People with ALS) who will knock you right over with their courage and determination. You can expect to laugh and cry as you reconnect with people you have met over the years. You can expect to experience life at its fullest when faced with its darkest moments.

I know for some of you the Walk can be cathartic and can bring a form of closure. For others it’s your way of being actively involved in trying to help a loved one and to help so many other like the person for whom you care so much. But there are others out there who may be too upset and still too deeply hurt by what has happened in your lives. You’d rather curl up and cry as opposed to getting out to Walk. Trust me when I say that we all have been there right beside you. We’ve all wanted to wave our hand and make the world just go away so we could deal with our hurt and our pain. That’s your right and nobody can take your sorrow away from you. But what the Walk and all of the walkers will give you will allow you to replace your sorrow with joy and your pain with healing. Sorrow never truly goes away but it can certainly lose it grip on our lives as we replace it with the good times and the happy memories that we share with our loved ones and friends. So take a chance, come on out this Saturday and have a great time. Meet some new people, share your story and help make a difference. You will find it rewarding and uplifting and your sorrow will start to fade.

Even though I do not consider myself to be the most religious person in the world I’ve always taken comfort in the 4th verse of the 24th Chapter of the Revelation of St. John the Divine, “And he shall wipe away all the tears from their eyes, and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain for the former things are passed away”.

Come to the Walk and together we will make the former things pass away.

See you all on Saturday.


A special message from Holly's Hope with Ferrous
Monday, October 24, 2011




Holly’s Hope – “2011 Lehigh Valley Walk”
Tuesday, October 18, 2011

Who Am I - Really?
Reflections by Kathryn Voit
June 2011

Who am I really?
A rag doll with a brain,
Whose life is not worth living
And others must maintain?
Or a person who’s disabled,
Who loves despite some pain.

Who am I really,
A victim, a burden, a quad?
At times I think like that,
Mostly, I’m of the human pod.
Evolved from worm through ape,
To an image of my God.

Wind, waves and stars,
Sing hymns of praise.
With no effort on my part,
I reflect the sun’s rays.
Thus despite many disabilities,
My body and spirit blaze.

Thank You Phillies
Monday, October 17, 2011

By Chris Martin

Every year we gather in November for our Walk to Defeat ALS. And every year we receive tremendous support from individuals, families and corporations. Yet there is another huge partner in the fight against ALS. Incredibly, this partner has fought against ALS since 1984. They have been there by the side of thousands of patients and families and never wavered in their support. And for that alone they are deserving of our praise. So this time around I’d like to thank The Philadelphia Phillies and Phillies Charities for everything they have done for the Greater Philadelphia Chapter of the ALS Association. To put in the proper perspective, the Fighting Phils have raised over $12.7 million for the Chapter. Their works have provided endless hours of free care and support for the people who need it most. The ways in which the Phillies support the Association every year is absolutely incredible.

Each spring the organization holds their annual Phillies Phestival at Citizens Bank Park. It’s an evening for ALS patients and their families to just relax and spend some time at the ballpark meeting and greeting the team. Just those few hours of normalcy and fun provides so many of them with a much needed boost. This year over 6,800 people attended the event and together they raised $893,033. As if that is not enough, the Phillies have been gracious and generous to the point of giving access to the stadium for our ALS Walk course. When they first offered the stadium back in 2008, thousands of Walkers had the amazing experience of visiting the stadium right after the Phillies had won the World Series! It was a surreal experience to say the least. The thrill of FINALLY having a World Champion in our city combined with the inspiration taken from the sight of thousands of Walkers made that day one that I, and I know many others, will never ever forget. And by a twist of luck I was given use of the PA System to make announcements. For one brief shining moment I was Dan Baker!!!

Flash to 2011 and a year in which things did not work out the way the Phillies, nor their diehard fans planned. But regardless of the disappointment,  we were able to share the awesome experience of seeing the Phils dominate the regular season. We know that next year the team will back and we will be right back there with them watching every pitch and counting every out. Why? Because we’re fans, no matter what. And in the grand scheme of things baseball really is just a game. No matter how the season ends, life goes on. In just a short number of months the team and the fans start the whole process over again. We’re glad to have the chance to go through the ups and downs all over again. And in my mind, I live for any chance to “do it all again” because in life there are far too many times we have one just one opportunity to share, to care or to love and then it’s gone. So we’ll all be back in April and we’ll all be wearing our red, cheering til we’re blue and bleeding our hearts out white in the hopes that our beloved Phillies will win it all.

 So for all the Phillies do for the ALS Association, for our Chapter and most of all for ALS Patients and families, THANK YOU. For the amazing dedication of my long time walk committee co member Nancy Giles and her husband Bill, for the great works of David and Lyn Montgomery and for the efforts of the Phillies organization as a whole I am grateful and I know you all are too.

And finally for Ruben Amaro Jr. the man who put this incredible team together and gives of himself each day, not only are Association and all of us grateful but together we will honor his ongoing contributions at the ALS Annual Luncheon this fall. My cap tips to a fellow Inter-Ac alum.

Thank you to our beloved Philadelphia Phillies.


Holly’s Hope: Courage and Strength
Monday, October 10, 2011

By Holly Bennett

Chris Martin, my co-blogger for ALS, writes excellent entries every week.  I enjoy reading them.  Last week he talked about the ALS staff.  I could not agree with his words more.  The staff at the ALS office works extremely hard.  The level of professionalism, passion, and energy is remarkable.  Every time I visit the Ambler Office, I feel welcome and appreciated.       

I could write many great things about the ALS staff.  For instance, how Wendy Barnes guided our family through the various obstacles of being an ALS caregiver.  Gale Houseman became a friendly smile and a warm hug every time we needed one. Jeff Cline is personal chauffer to board meetings when they are in downtown Philadelphia. Ellyn Phillips and Jim Pinciotti make me feel like I am making a difference every time I see them.   But, what about Allison Walker? Allison Walker and I have worked together for nine years on the Lehigh Valley ALS Walk. Her positive attitude, project management skills, and ability to motivate people amaze me.   I appreciate her in so many ways.  I am looking forward to another phenomenal year with her on October 22.

Thank you to all of you and I could have said something about each one of you in the office but I think Tony will only give me so much room for this blog.  In a nutshell, I am proud to be a part of such a wonderful group of people.

I want to share an awesome experience that happened to me this week.  I invited Donna and Paul Katcher to my daughter’s Daisy Girl Scout meeting last Tuesday evening.  Donna is an ALS patient.  Paul is her husband and her rock.  The reason I invited Donna and Paul to our meeting is that my daughter’s Girl Scout troop was learning about courage and strength.  I could not think of a better way to demonstrate these two virtues to a group of five and six years than by talking about a person who has ALS.

We sat in a circle and introduced Donna to the girls.  I asked Donna to participate in a short ceremony where we welcomed the girls back from a long summer.  She read each scout’s name and individually the girls came forward and received a special badge.  Donna then explained to the girls what that ALS affects her muscles.  She showed them her leg brace that she wears and described how it helps her maintain strength. 

Donna and Paul read to children about ALS.

Next Donna read a children’s book about ALS to the girls that described a teacher who had ALS.  The teacher eventually got too weak to teach and a new teacher took over.  We opened the floor up for discussion and the girls wanted to know what eventually happened to the teacher.  Donna eloquently told the girls that the teacher went to heaven.

If you could have heard what she said next, like me, you would have felt a sense of awe.  Donna talked about courage.  She told the girls she makes everyday a happy day.  “Courage,” she said, “is knowing that it will all be okay.  I love seeing the mountains, I love being with animals, and I spending my days with Paul, he instills courage in me.”

I was concerned about how the girls would digest the weight of Donna’s message.  They certainly seemed comfortable with Donna and seemed to understand how courage and strong she truly is.  Some of the girls will volunteer at the up-coming Lehigh Valley Walk.  They will see other ALS patients and understand their battle. 

I am truly grateful to Donna and Paul for volunteering their time to speak to our Girl Scout troop.  The lesson they taught was extremely powerful. 


Thanking those who help make the Walk to Defeat ALS happen
Friday, October 07, 2011

By Chris Martin

 

 

Well, here we are a month away from the Walk, and I think it’s high time to thank the people at the Greater Philadelphia Chapter for organizing this event every year.   

Specifically, I want to focus on two people who were and are the driving force behind not only the Philadelphia Walk, but also all of the other Walks in our region.

When I first contacted the ALS Association and asked what I do to help, I was put in touch with Allison Walker, an Events Coordinator at the Greater Philadelphia Chapter.  It was Allison who first introduced me to the Walk to Defeat ALS®, and I am forever grateful for being introduced to both Allison and the Walk.  Allison has done so much for me and so much for others since she and I first met.   In fact, she has accomplished so much that being forever grateful to her doesn't seem to be enough gratitude considering her efforts.   

At the time we met, Allison was in charge of organizing not only all of the Walks, as if one Walk weren’t enough, but also in charge of organizing all of the individual members of the Walk Committee.  She arranged every type of support you could think of for the Walks.  Allison did it all...from securing the venue; to inspiring and mobilizing the Walk Teams and their Captains; to aiding in the enlistment of corporate donors; to coordinating all of the volunteers; and finally to filtering all of the ideas of the Walk Committee.   And she has done so with amazing success year after year.

Over the last few years, Marianne Mancini has most ably taken over the reins of the Philadelphia Walk from Allison, who logically became the Chapter’s Events Director. Marianne jumped right into the fray and has been incredible at coordinating so many different facets of each Walk and amazing at organizing so many different people and ideas. On Walk Day, you’ll know Marianne because she looks like the person in charge.  Head on a swivel, marshaling dozens of volunteers and a couple thousand walkers as we rapidly approach the moment we cut the ribbon at the starting line, Marianne is exactly the type of person we want in charge of our Walk. Both she and Allison have been and are the right people in place to ensure success.  To be sure, they both had help in that success, thanks in no small part to the great people at the Philadelphia Chapter.  Great people like Ellyn Phillips, Jim Pinciotti, Jeff Cline, Julie McKeever, April Haas, Joan Borowsky, Becca Telthorster and so many others at our beloved Chapter.

This year, there are seven walks. Seven Walks to Defeat ALS; it’s incredible. The number of Walks and the number of Walkers grow every year.  And even though it’s tough knowing that so many more patients and families have had to deal with a diagnosis of ALS, it’s incredibly comforting to see more and more people band together to fight for an end to this disease.

Most of the Walkers will never cross paths with Allison, or with Marianne, or with most of the people in the Chapter; but hopefully, this blog will help them to appreciate the work of two very special people, as well as the efforts of all the people at the Greater Philadelphia Chapter. Thank you to each and every one of them.


Holly’s Hope - A Saint Reflecting an Image of Hope
Monday, October 03, 2011

By Holly Bennett

I saw an article this week entitled, “Saints honor ALS-stricken Gleason with emotional ceremony.”  Steve Gleason a retired “special-teamer” for the New Orleans Saints received an honorary Super Bowl ring this week by his teammates.  Steve is 34 years old. In January of this year, doctors confirmed that Steve had ALS. 

Steve and his wife did not tell anyone outside their immediate family circle about the ALS diagnosis until last month. The couple took time for themselves after his diagnosis.  Their first decision after learning that Steve had ALS was to have a child.  In three weeks, Steve and his wife will welcome their first child into the world.  Steve and his wife traveled the globe for the last three months, videoing their journey for their unborn child. 

In other articles, Steve talks about what it feels like to have ALS.  He describes his fear of going out in public as his health deteriorates.  "I'm afraid to walk in public, because people look at me. But I'm not going to stop. I'm afraid because if I want to commune with my friend Shad (Meier), I have to ask him to cut my chicken for me. But I did it. And I'm afraid to go back and see my teammates and coaches because I know that I'll feel envy. But I'm going to do it anyway. Because fear is just a feeling, and if you can acknowledge that fear, digest that fear and overcome it, the rewards are incredible."

The “ALS Affect” inspired Steve and his family to launch Team Gleason.  Steve’s mission for Team Gleason is to “heal, provide for his family and continue to live the life he loves.” Hope is evident in Steve’s life.  His hope for the immediate future is to have enough arm strength to hold his newborn child in a few weeks. 

Steve also has hope for physical healing.  Hope for healing is an extremely powerful thought and not commonly heard when talking about ALS.   Here is Steve Gleason, a thirty-something NFL football player.  On the field, he has suffered concussions, bruised bones and muscles, and punctured a lung once.  His body healed from all of these injuries.  Now, his body fights to heal the biggest hurt of all, ALS. 

Steve Gleason is in the game of his life.  His opponent in this game is ALS.  He will have successful tackles, memorable victories, and fanfare beyond his wildest imagination.  I sense that Steve will utilize his hope for healing in the most positive way possible.

He is a figurehead who can help the ALS community make progress to find answers.  My hope for Steve and all ALS patients is that he enjoys every birthday, holiday, walk in the park, and embrace with his child knowing that even people he does not know have hope for healing and curing ALS.  I think Steve Gleason is a true Saint and will influence the ALS community in a plethora of ways.

We do not know why ALS strikes certain people over others.  It just does not seem fair.  ALS has robbed my grandfather of his best friend, life partner and hope.  My grandfather is not alone with his struggles with ALS.  Negativity will surface in some of us, that is human nature. My grandfather will celebrate his 85th birthday this week.  This will be the eighth birthday without my grandmother.  It would be a fallacy to say that hope for ALS is in my grandfather’s thoughts.  He is sad and angry.  The only thing that makes him smile since Ruthie is gone is his family.  Tonight we smiled and celebrated my grandfather’s birthday.  As my grandfather blew out his candles, I secretly wished for universal hope and healing.

For more information about Steve Gleason visit his webpage at: http://www.team-gleason.com/


Because of YOU
Thursday, September 29, 2011

By Chris Martin

 

Over the years, The ALS Association Greater Philadelphia Chapter Walk to Defeat ALS (R) has been blessed to be supported by so many wonderful people.  In fact, there have been so many that it would be a herculean task to name every single person who has joined the fight.  These individuals unite as a team dedicated to the ALS cause  and comprise one giant family.

So I dedicate this post to YOU.   Over the years, YOU have not only walked but have also run, biked, swum, wheeled or done whatever YOU could to support the ALS Association.  It is because of all of YOU that hope lives on in the face of impossible odds.  As Napoleon once said to one of his generals, “Impossible isn't in my vocabulary, remove it from yours;" and that’s what all of YOU have done since being confronted with ALS.  Without your support, dedication and energy, the ALS walks could not have been as successful as they are. Because of your desire to help others and your goal to raise money to fight Lou Gehrig's disease, many persons with ALS received, and continue to receive, the critical care and support that they so desperately need.  Because of YOU, families and ALS patients receive incredible care without having to pay thousands and thousands of dollars. We are all in a time of economic uncertainty, and a diagnosis of ALS can turn that uncertainty into guaranteed financial desperation. The cost of long term care can permanently cripple families’ finances.  Yet because of the donations YOU made, many patients and families received free care and therapeutic services.  In addition, your support has also helped to fund critical research to find treatments and a cure.   

The ALS Association, and more importantly ALS patients and families, cannot begin to THANK YOU enough.

YOU are the foundation of all of the support that the ALS Association provides.  

YOU are the rock on which the Association is built and provide the hope that we can overcome ALS.   

My heartfelt thanks go to all of you.


The “ALS Affect”…and its impact on hope
Monday, September 26, 2011

By Holly Bennett

After last week, I will refrain from talking about the Phillies.  My superstitious husband thinks that it is my fault they lost eight games in a row because I mentioned them in last week’s blog.    

I can tell this week is going to be challenging. My daughter fell at her cross-country meet today and is now sporting a golf ball sized lump on her forehead. (This is a running event not tackle football.) She insisted on a self-prescribed treatment of watching the movie Megamind and eating a bowl of M&Ms.  Her treatment plan worked, she is feeling much better.  If only every ailment could be treated that simply. 

ALS does not just affect a patient.  ALS affects families, neighborhoods, networks of friends, and employers.   The “ALS Affect” many times turns into wonderful acts of outward love and affection.  ALS often makes people feel powerless so in turn they create environments of change.

I met a passionate group of Samuel Adams co-workers and friends who work feverishly to support an ALS patient. They invited me to visit their workplace last fall.  The contact person told me that the company would like to present a check to The ALS Association.  The check was money raised from a golf outing they held in honor of an ALS patient who was an employee of Sam Adams.   When I arrived at the Sam Adams administration building about ten employees greeted me.  They were all friendly and extremely enthusiastic about the event they held. 

The same group from Sam Adams contacted me this past winter.  They invited me to another fundraiser they were planning. I attended the event with a friends, family, and PALS.  The individuals that I met when I visited the Sam Adams office the first time introduced me to many other employees at the event, including upper management.  At the end of the night, the Sam Adams group handed me one thousand dollars to take back to the ALS Association.  A few weeks ago, the Sam Adams crew organized a second golf outing and raised over $12,000.    

The “ALS Affect” empowered the Sam Adams organization to honor a fellow employee and demonstrate how much he is cared about and appreciated.  The “ALS Affect” empowered this wonderful group of people to stimulate a change.  The money they raised assists patients, research, and awareness.  I believe the “ALS Affect” provides an opportunity for new friendships.  I am greeted with a hug when I enter the Sam Adams building, not a business handshake.

There is no doubt that the “ALS Affect” causes frustration, but that frustration is hope in disguise. Sam Adams is not the only group influenced by the “ALS Affect.”  Individuals influenced by the “ALS Affect” hold spaghetti dinners, softball games, golf outings, bike rides, and other events continuously.  These events are environments of hope.  Hope that the money raised will get us one-step closer to a cure.  Hope that the money raised will preserve the quality of life for one patient.  Hope that we can identify why ALS affects the human race. 

I leave you this week with a quote from Helen Keller, “Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence.”


Inspiration
Thursday, September 22, 2011

By Chris Martin


Inspiration comes in many forms and often appears when we are confronted with the most painful of circumstances.  When I think of all of the people who have been diagnosed with ALS and all of the families who have watched loved ones pass away, I realize it would be easy for anyone, or for any family, to slip into depression and despair.  From the moment we learned of my father's diagnosis, I was shocked by the reactions of my family and my father. How could any of us, or any other families, manage to keep smiling, keep moving forward and not just plain give up?  Why not just give up?  Weren’t we presented with an unalterable situation?

Amazingly, I began to realize that while everyone accepted the diagnosis, they also accepted that there was nothing they could do about it.  What I observed were families and patients unwilling to stand idly by to await their impending fate.  To be completely blunt, ALS is a death sentence.  Yet the reactions and responses I witnessed spoke of something other than the despair associated with a terminal disease.  Many years ago, Dylan Thomas wrote of raging “against the dying of the light” and of fighting with every last breath even though we know we are powerless against death and the forces of nature.  I just wish Mr. Thomas had had the privilege to meet some of the ALS patients and families that I have been blessed to meet over the years. He would see the personification of such glorious rage in its purest form.
 
From the day I met Gerry and Kathryn Voit, it was clear to me that I was dealing with two very engaged, determined people.  As I became involved with the Walk and started attending meetings, the Voits showed me what it meant to be unwavering and dedicated in the face of devastating news .  Not only did they chair all the aspects of setting up the ALS Walk, but they were also a driving force behind obtaining donors and support.  They never pulled punches with their opinions or ideas nor ever stopped pushing for more.  Perhaps in their minds, the “in your face” diagnosis of ALS warranted an all out “in your face” response.  Their unending determination was, and is, simply amazing to behold.  Not only did it inspire me, but it also motivated many others as well.  And thanks to the Voits, many people have accepted the challenge of getting involved.  For the Martins, our family could simply have disappeared into the sunset after my father passed away, and many other families could have decided that enough was enough and gone on with their lives after their loved ones passed away.  We could have said ALS had taken too much from us.  We could have gone gently into the night, but that is not what you do after you have met and become friends with people like the Voits and so many others over the years.  You do not turn away from a fight when you have encountered such courage, strength and dignity.  You take up the mantle and you carry the fight wherever it needs to be taken.  There are so many families, families devastated by ALS, that have done just that.
 
I have been truly blessed to work with the Voits.  In addition, I have had the privilege and honor of working with Wes Rose and Gary Temoyan, both of whom are PALS (Persons with ALS). Watching Wes and Gary, two dads in the prime of their lives, battle and prevail against ALS completely blows me away.  Both of them know what the diagnosis means for them, for their families and for their children.  Yet every time I leave their presence, I am awed by how they are able to turn devastation into joy and fear into hope.  There have been others like the Voits, Roses and the Temoyans.  Sadly, there will be more families affected by ALS.  I just hope that the courage demonstrated by the patients, by our family and by all of the ALS families will comfort and inspire new patients and families to get involved and provide hope. Someday in the future, we’ll all be able to look back and talk about the loved ones who fought the good fight and the families who carried that fight until the battle against ALS was won. 


A Thank You to amazing co-workers and an amazing company
Wednesday, September 14, 2011

By Chris Martin

 

As I write these blog entries,  I could not help but reflect on all of the support provided to my family and our team over the years.  The support has come each and every year from the extended Martin family, our dear friends, and our amazing co-workers.  Even with the help of a dictionary, I am starting to run out of exclamations to aptly describe their generosity.  However, I am going to praise all of them yet again. And since there are so many people to thank, I’ll use this blog entry to praise my co-workers and my company, Brinker Capital. Praising my family and friends comes next. Let’s hope everyone has enough time on their hands to read my epic to thank all of them.  

To give you a bit of background, you should know that my company has been far from immune to the ravages of ALS. Not only did my father have the disease, but three of my co-workers also had family members who were diagnosed with ALS.  My father, my co-worker’s mother, another co-worker’s uncle, and  yet another co-worker’s grandfather passed away as a result of their battles with ALS.

When you look at statistics, two out of every 100,000 people have ALS.  Two; that’s it. Yet in our office of 120 people, there were four families affected. What makes Brinker’s statistic even more incredible was that years after the first family dealt with ALS, a fifth family was also dealt this unfortunate hand. Sadly, the fifth family member diagnosed with ALS was also a former Brinker employee. All have passed away and will never be forgotten.

Five families. Five individuals. Five diagnoses. There are no common themes, no quick answers, and no clear reason why the people in the families or our company family have been affected this way.  It would be all too easy to say, “it is what it is” and too simple to talk about the fickle hand of fate.  It would be logical to call the five cases a statistical anomaly. To be sure, no one involved had any other choice than to accept each diagnosis. But what no one could, or would, accept was to do nothing.  So we all stepped in to help lead the fight against ALS, and my company has been by my side since the day that I asked for its assistance.

As an investment management firm, we have seen the markets swing wildly over the years. We’ve been up and down and down and out. We have had to lay off close friends and have suffered through difficult times as a firm. Yet, not once has Brinker Capital said no when we have asked for support. Time and again as a firm and as a family, they have answered the call to help.  To be sure, I have incredible gratitude for the “caring company”.  Brinker’s care and support is what makes it part of my extended family.  My co-workers say the same thing as well.  By giving back to their employees and to our community, they demonstrated what it means to be a partner in their employee's lives.

ALS doesn’t care about recessions. It doesn’t care if a family can’t meet its mortgage.  It doesn’t care if someone lost his or her job. It is entirely disconnected from any trials we may face.  It is a remorseless disease with one outcome; and if that isn't enough, that outcome is of indeterminate length.  Yet as ALS takes each newly diagnosed person from us, our families, friends and even our companies stand by our sides.

Anyone, or anything, can take away a part or all of our lives. Taking is always easy to do.  Giving of yourself and giving to others can be difficult and stressful.  Yet this giving makes hope possible.  So Brinker does what they can to give, to support and to care. They do what they can to provide hope.

And hope is far more powerful than despair or grief.

With my deepest gratitude to my Brinker Family for all they have done and for all they continue to do. 


Guest Blog: Eagles for Enzo
Wednesday, September 14, 2011

By Vincent Sirianni.

Over the past seventeen years I have watched someone whom I love and have the greatest respect for agonize and suffer from a terrible disease, called ALS (Amyotrophic Lateral Sclerosis). I was in the 9th grade and played football for my school team, and, similar to my grandfather, was an avid football player. I had devoted the past five years of my life to it. But something changed. I developed a passion for golf. 

I never really played golf before but I had a passion to try it. So I gave up football. I was determined to make Varsity Golf in 10th grade.  I dedicated myself to this sport.  I had the same dedication and determination as my grandfather did.  He was told he only had four years to live and this disease would be debilitating to the point you will not be able to talk, eat, walk and one would lose control over your entire body.  

I saw my grandfather beat the odds.

He was told he only had 4 years to live but lived for 17.   They did not know how he did it.  I know:  determination and will.  I learned this from him.  It was a gift he gave to me.  I wanted to give something back,  to make a difference.  I knew that somehow I could with golf.   I wanted to help in conquering this disease, and golf could help.   After all, everyone loves a good golfer. 

I have played in competitive tournaments and knew that I could use this to make a difference.  I decided to reach out to family, friends, and golf associates and ask for support for a great cause.




Holly's Hope - The Walk that Emanates Uniqueness
Tuesday, September 13, 2011

By Holly Bennett

The week of rain is over. Fall and all of its beauty is just around the corner.  The Lehigh Valley Walk to Defeat ALS is only thirty days (more or less) away.  I trust that October 22nd  will be one of those beautiful fall days. 

I attended my fair share of walks and runs for various causes over the years.  Most of us participate in these events for personal reasons, physical exercise, or employee team building.  We pay our registration fee, show up the morning of the event, walk or run the course, drink water, eat a bagel, and head home.  If you want to experience a walk that is unique from this familiar process, you should walk with us on October 22nd at Coca Cola Park.

Why is the Lehigh Valley ALS Walk unique?  Here are the top five reasons why.

1.     There is no registration fee to participate in the event.  Walkers need to register either as an individual   walker or as part of a walk team, but there are no fees associated to the registration process.

2.      Walk teams are incredibly spirited.  Catchy team names like Donna’s Dugout, Steps4 Sarah, Jeff’s Jedi, Joe Pa’s Dream Team, and All in for Jim give you a sense of each team’s passion and hope for the future. (For a complete list of walk team names go to www.alsphiladelphia.org and click on Events, Walks to Defeat ALS, and Lehigh Valley Walk.)

3.      Signs with patient names line the two- mile walk route honoring those who live in the Lehigh Valley.  Just like the walk, each patient is unique and deserves recognition as we walk to support them and their families.

4.      Walk teams want you to know who they are by wearing custom designed t-shirts.  Check these t-shirts out from Fritz’s Fight walk team.

 

You can tell by this photo that this team did not just show up for the free bagel. They are in it for bragging rights. The unique factor with the shirts is that as we walk a sea of colors spills over the stadium. Each color t-shirt represents a unique walk team who is honoring or memorializing an ALS patient.

5.  After the last walker crosses the finish line, the top individual fundraisers, top team fundraisers, top corporate and school fundraisers, and finally the total amount raised for the day is announced. 

In closing, Walt Disney once said, “The way to get started is to quit talking and begin doing.”  The Lehigh Valley Walk Committee stopped talking nine years ago.  Not only did we “begin doing,” we worked to create a unique event that welcomes everyone, including you!


Why I Walk to Defeat ALS
Thursday, September 08, 2011

 

On November 13th 2011, it will be 7 years and 7 months since my father lost his battle to Lou Gehrig's Disease (ALS). When my dad was first diagnosed with ALS we were all in deep shock. None of us knew much about ALS. Being an information bloodhound, I tried to find out everything possible about the disease. Sadly, nothing I read was positive. NOTHING. No "miracle cures" were available. No specific treatment existed for ALS. And since the 1940's, when Lou Gehrig died, any advances in research and medicine to treat ALS have been very slow to come. Currently there is not even a test to determine if someone has ALS. A person is diagnosed as “having ALS” when the doctors have exhausted all of the other medical possibilities. So in most cases, people hope for some diagnosis, any diagnosis ,before a doctor says the fateful words "you have ALS". In medical terms those words are a death sentence. Worst of all they are death sentence of indeterminate length. Most patients hope (odd use of the word) for a being diagnosed with condition other than ALS. Why? Because few fatal diseases ravage and destroy the entire body and nervous system as rapidly and as devastatingly as ALS. Most patients pass away with a body that has become a withered shell of its former self. Yet all the while, their mind remains fully intact. That is the most shocking result of the disease, while all else is wasting away, in most cases the person’s mind remains intact.

To put this in perspective let me tell you how rapidly the diseases progresses. When my father was diagnosed, he had trouble with his balance and some weakness in his legs. By January of 2004 the only thing that my father could do was to BLINK. Nothing else. Nothing at all. Think about that. The only movement that he had in his entire body was in his eyelids. Anything that he wanted or needed had to be done for him by someone else. And he could only blink to tell us what he needed. That goes for anything at all, from eating, to going to the bathroom and to taking his medicine. To put it in perspective, there was one where my mother, sister and I spent almost an hour trying to figure out what my dad needed. All he could do to communicate was to blink twice for "yes" and once for "no". After a difficult time of questioning, we finally learned that he had an itch on the end of his nose. That was it. It took 3 fully healthy people almost an hour to come up with that simple answer. So one of us leaned forward to scratch it. The look of satisfaction/exasperation on his face told the whole story. He had had enough of being permanently imprisoned in his body. Just think for a moment about getting an itch. After you think about it and feel the desperate need to take care of it, I want you to think about never being able to scratch it. Never. Something as simple as scratching a nose actually is more difficult for an ALS patient than it is for you and I to scale Mt. Everest.

By February 11 2004 the disease took its’ final toll on my dad and he passed away. While the sorrow and grief were almost unbearable, it was the support of our family , friends and the ALS Association that helped us to cope. Since my dad’s passing we have received hundreds of letters of support and many donations to the Philadelphia Chapter of the Association in his name. The donations and letters are humbling and awe inspiring to say the least and the work of the Philadelphia Chapter is as well     

The Chapter uses these donations to provide PRO-BONO support to Persons with ALSand their families. From giving free access to speech therapists, neurologists and certified dieticians to providing patients with computers that can talk for them, the ALS Association is a CRITICAL component in dealing with ALS. They provide support and services without which a patient and family would suffer immeasurably. To put it in perspective, my dad was actually given a laptop that was able to do his speaking for him. I’m sure you are all familiar with a computerized voice, like the one used by Stephen Hawking.  For my dad, the best part of the computer wasn’t the ability to communicate it was the ability to communicate canned one liners. The man was sick beyond belief, yet his favorite thing was to toss out computerized lines like "if brains were dynamite you would not have enough to blow your nose". That line always brought a laugh, and sometimes a tear, out of those around him.

My mother sister and I cannot begin to thank everyone at the ALS Center for their help. But what we can do is to show them how much their work and their services are appreciated on a daily basis. That is why we walk, support and turn to others, like you, for assistance. This Walk is a major reason the Chapter can provide the care and service they do. Be it patient care, or care for the caregivers, the Association does everything in their power to provide comfort and support. The Walk is how we come together but for me the why goes a bit further.

I walk for my dad. For his unending courage and his strength in the face of impossible odds.

I walk for my mom. There are no words to describe who she is and what she did for my father and continues to do for our family.

I walk for my sister , Dad’s “little mouse”, who turned our tragedy into a way to help others.

I walk for the Voits, the Roses, the Glenns, the Temoyans and every other family affected by this horrible disease.

I WILL walk until this disease is no more, until nobody is affected by ALS, or until my legs can carry me no further.

And then I will crawl. 
 

Chris Martin

Walk to Defeat Chairman 


Holly’s Hope
Tuesday, September 06, 2011

My name is Holly Bennett. I am the Walk Chair for the Lehigh Valley Walk to Defeat ALS.  This is my first blog.  My husband bought me an iPhone for my birthday last month so between my blogging and using an iPhone I feel the power of social media.  Okay, I have a degree in library science let’s not get too crazy too soon, right?  I will be loyal to the Dewey Decimal system and pioneer the social media frontier at a slow and steady pace. 

The purpose of Holly’s Hope is to share experiences about ALS and to keep Hope at the forefront of the conversation. Let me tell you a little bit about my first encounter with ALS and the reason I know Hope will lead us to the answers of this awful disease. 

In 2002, my grandmother, Ruth Lichtenwalner, was diagnosed with ALS after a litany of medical tests.  Anyone with ALS or that has someone close to them with ALS will know that the time leading up to the diagnosis is agonizing.  Test after test was administered to Ruth with the goal of trying to find an answer to “What is wrong with me?” 

It just so happened that the day Ruth was diagnosed I was the one that went with her to the doctor.  No one in my family had any idea that an earth shattering diagnosis would be presented in this appointment.  I certainly did not.  When the doctor said, “Ruth I am certain you have ALS” she couldn’t even look at me. We both cried.  On that New Year’s Eve day in December 2002, our battle with ALS began. 

In 2003, my family faced decisions about feeding tubes and searched for answers on how we would continue to communicate with each other.  Each day seemed harder for Ruth.  The frustrating part was that the doctors could not give her medication to improve or even slow her symptoms.  Chemotherapy for ALS does not exist and organ transplants will not cure ALS.  My family did what we could do for Ruth both medically and emotionally.  We took her home and we cared for her. 

Day after day, she would write notes to us and try to live her life as she did in the past.  The difference was she could no longer eat her favorite food, bake her favorite desserts, sleep soundly through the night, or sing her favorite songs.  We all knew this and tried to act as if was okay.  It was not okay.  That’s when I found Hope.

I brainstormed about what I could do to help my grandmother.  You know, kind of like my chemotherapy for ALS. I talked to her about what I could do to help and that I felt the need to raise awareness about ALS in the Lehigh Valley.  In October of 2004, we held the first Lehigh Valley ALS Walk.  I will never forget that beautiful day.  Ruth cut the walk ribbon in her light blue long sleeved shirt that read, “Stop, Walk, and Rock for Ruthie.”  I thought if I could attract 200 walkers and raise $10,000 it would be a huge success.  That first year we raised over $40,000 and attracted over 400 walkers.  Hope. There was now a true sign that there was Hope.

My grandmother passed away in June of 2005. She was tired and needed peace, but I am still fighting for her and the other ALS patients in our community. 

On Saturday, October 22, the Lehigh Valley will celebrate its ninth year hosting a walk to support ALS.  On walk day, I will see ALS patients and families who are now close friends of mine.  I will see others silently grieve with me for those patients who we lost this year.  I will see joyful camaraderie among families, friends, co-workers, and neighbors as they work so hard to fight the battle of ALS.  I will see new patients, new walk teams, and new sponsors.  Will I see you? 

Welcome to the 2011 Lehigh Valley
Walk to Defeat ALS®

Saturday, October 22, 2011

 

 

Coca Cola Park, 1050 IronPigs Way, Allentown, PA

Registration: 9 a.m. Walk Begins: 10 a.m.

Walk distance: 2 miles

 
Want to blog because you can?

Contact Tony Heyl at
(215) 643-5434 or tony@alsphiladelphia.org


Fall 2011 Blogs

What to Expect This Saturday

A special message from Holly's Hope with Ferrous

Holly’s Hope – “2011 Lehigh Valley Walk”

Thank You Phillies

Holly’s Hope: Courage and Strength

Thanking those who help make the Walk to Defeat ALS happen

Holly’s Hope - A Saint Reflecting an Image of Hope

Because of YOU

The “ALS Affect”…and its impact on hope

Inspiration

A Thank You to amazing co-workers and an amazing company

Guest Blog: Eagles for Enzo

Holly's Hope - The Walk that Emanates Uniqueness

Why I Walk to Defeat ALS

Holly’s Hope


 
 

The ALS Association Greater Philadelphia Chapter
321 Norristown Road - Suite 260, Ambler, PA 19002
215-643-5434

The ALS Association is a 501(c)3 nonprofit organization and donations are tax deductible to the full extent of the law.